Dealing with Diabetes

Last night’s OzDOC chat on diabetes disruptions really put my mind to work. I can’t say that I think of diabetes as being disruptive all that often. Yet as I began to answer some of the chat questions, it became pretty clear to me that it was. Diabetes is disruptive. It’s disruptive to my day, it’s disruptive to my mindset and it’s disruptive to the people around me.

One disruption that easily comes to mind is the time I have previously wasted, obsessing over what I need to bring with me every time I leave the house. I tend to overthink things quite a bit, especially with the more time that I have up my sleeve.

How long will I be gone? How far away from home will I be? Am I going to be comfortable at the party with all of this crap weighing me down? Do I really need all the stuff I have brought with me?

Another disruption that comes to mind is the people around me. I am too nice of a person. While I don’t particularly feel the need to explain myself, I do feel conscious of the fact that I might not be polite to others. Like trying to find the right moment to excuse myself and walk away from someone who is talking to me.

Then there are days where diabetes puts a damper on my mood. Or I’m not having the best day, and having to deal with diabetes on top of it simply makes it worse. I’m more quiet, withdrawn, and probably don’t do my best at explaining this to the people around me. But I feel ridden with guilt for it afterwards.

I’m also really conscious of the perception toward diabetes that I’m feeding to others through my actions. I don’t want people to think that I’m ill or unwell. I’m quick to deflect people’s looks of pity with confident explanation of what I do to myself to manage. Okay, cutting the queue at Pathology yesterday probably didn’t help my cause, but you can’t live with this lousy condition without the occasional perk…

The one disruption that I would easily wish away is a low blood sugar. Correcting a high is easy enough. I’m pretty confident in my ability to keep tabs on pump failures and ketones. Yet a nasty low is enough to knock me sideways. It frustrates me that I can’t even go for a walk around the block without having to worry about going low.

While diabetes will continue to be disruptive in every which way that it pleases, always remember that you most certainly are not.

This T1 Talk is titled Managing the Unmanageable, and tackles the more technical side of management – from diabetes healthcare professionals to pens, pumps, fingersticks and CGMs. There are two parts to this T1 Talk. The first part is here, and the second part follows over on Bec’s blog at Sweet and Sour Diabetes.

The Australian health system is split into public healthcare and private healthcare. What do you use and why?

Frank: I began seeing a diabetes educator privately last year because I needed someone who had more time for me. The public system pushed me towards self management as soon as I was able, and diabetes education is something I genuinely missed for a few years there in the middle. I wanted someone consistent, someone who I could get to know and who I was able to contact inbetween appointments. I didn’t feel like the diabetes education I received in the hospital was personalised to my needs towards the end.

I see my allied healthcare professionals privately too, simply because it’s more convenient than going to the hospital.

I still see the endocrinologist publicly at the hospital. I feel like the endo is more strictly business. She refers me for all of my important check ups, reviews my hba1c and other pathology reports. I only tend to flag the more “medical” concerns with her. I’m happy seeing my endo publicly, and I don’t feel I could justify the cost of going private based on my experience here.

Bec: Your relationship with your CDE sounds brilliant!

When it comes to health system, I’ve sampled most of it. Currently my diabetes management primarily falls on two people, both private practitioners. My private endocrinologist is basically a whole healthcare team in one. She manages everything a diabetes educator would, as well as her usual endo role. This suits me really well and I feel very well supported in the private system. However, this was hard for me. I strongly believe in public health care being the best quality care. I believe you shouldn’t be able to pay more for better health care, it should just be a given. Unfortunately, the public system (whilst amazing as an early teen) was not the best fit for me as an adult. I see my allied health professionals in the public system, and everyone else privately.

Frank: Wow, the all in one sounds awesome. It sounds similar to endos I’ve read about in American blogs. It does sound expensive, though.

Bec: It’s not too bad price wise considering it’s only once every 3 months. She’s very supportive by helping out between appointments via email, but I often feel guilty for asking for help when I’m not paying for it.

Describe the relationship you have with your Diabetes Educator and/or endocrinologist.

Frank: I see my diabetes educator once every three months. I’m pretty proactive with my management, so at the moment it’s more than enough. I’ve got her card and I know I’m welcome to call or email inbetween appointments if need be, which is comforting. It’s so good to have someone who dedicates that whole hour to you. She lets me steer the conversation, and I don’t feel pressured into anything I don’t agree with. I love that my educator also explores things like how I feel with my current level of management, or how I handle my diabetes around others. The price I pay is absolutely worth it.

Bec: I’ve always thought your educator sounded amazing. I remember mine at the kids hospital were brilliant. She sounds like she takes a real interest in your health overall, rather than focusing on just one part of diabetes.

My endocrinologist is quite business like and direct, but I like that about her. She understands my approach to my t1 and supports that, but she also tells me when to dial it back and give myself credit for what I AM doing for my management. She’s very contactable outside of the quarterly appointments via email which is very helpful for my management. I find that I’m not as self sufficient as you are Frank, and I need a bit of help working out what to do with my insulin rates. I think this might be because you’re not very self sufficient in the paediatric setting. I understand how everything works but still feel some hesitation making my own rate changes without confirming it with an endo. Plus, with work and uni and constant fluctuations in my sugars I need a helping hand to sort through the mess. So just like your educator, my endo is certainly worth paying for. I just don’t have the brain space to do it alone.

Frank: That’s fantastic. We’re under all this pressure as type 1s to constantly manage well, that along the way I think we lose sight of what an achievement this is in itself. So, I think it’s great that your endo gives you credit where it’s due. Basal rates are really tricky to work out, and obviously you need to allow time for them to kick in and sometimes it takes a lot of trial and error before you get them right. If you feel more comfortable making basal changes under the guidance of your endo, then I say good for you. I’m glad you feel supported in it.

What would you change about the system of healthcare in Australia?

Frank: Stop cutting resources in diabetes clinics! Stop pushing patients away! The number of patients in my diabetes clinic keeps growing, but over the years it seems the resources continue to be stretched thin. The wait time to see a diabetes educator is at least a month, and although I’m supposed to see the endo in 9 months, it will likely be closer to a year. Once upon a time, diabetes clinic was the only resource I relied upon to manage my diabetes. I couldn’t imagine where I would be today if I hadn’t diversified my investment chips into peers, websites, books, social media, private education and allied health professionals.

Bec: Excellent points there. So you see your endo less than once every 3 months? That makes sense considering the role your educator plays in your management. I agree that adult care needs to improve, which is something transition services such as Trapeze (a company I work for) is working toward. I left public health care because it just didn’t fit me or my needs.

The thing I would change is the idea that CGM is a luxury. It certainly is not. I can’t feel my hypos very much, and I tend to drop in my sleep. How anyone can consider an alarm system that keeps you alive a luxury is beyond me. Yes, it’s subsidised for those under 21 upon recommendation from their endo, but t1 has no age cut off. I’ve spent a lot of time contacting politicians to make a change. Just last week I sent a letter to my local member to bring the issue up again. Probably not effective, but at least I’m trying to do something about it.

Frank: I feel so guilty to whinge about CGM considering how lucky we are here in Australia, but yes I wish they were more accessible to me. While I’m so happy for the kids who will get one subsidised, I feel like our government has simply forgotten about the rest of us with type 1. I worry so much about going hypo unaware. I go through tonnes of test strips. I usually set an alarm midway through the night, just to make sure things are sitting steady. Good on you for doing something about it, I still haven’t gotten around to contacting my local MP.

Head on over to Bec’s blog at Sweet and Sour Diabetesto read the second part of this T1 Talk. We delve into pens versus pumps, fingersticks versus CGMs, and the challenges of making changes in our management. Catch you there!

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My red, plastic plate was piled high. I’d grabbed a scoop of hot apple crumble topped with Connoisseur ice-cream, a Cherry Ripe chocolate cupcake and a slice of liquor sponge cake from the desert table at our family get together over the weekend.

Get togethers in our family are all about the food. I spent most of Thursday telling Mum that she’d prepared way too much for our get together that evening, and the remainder of the weekend saying I told you so. Nonetheless, you still want to try and have a little bit of all the deliciousness.

“How do you manage the sweets with your diabetes?” my Uncle asked me as I sat down at the table with my plate.

After all these years with type 1, you sort of begin to expect these kinds of questions. I mean, even I get a little conscious when I sit down with a piled plate, wondering what others must think.

I went on to explain that I would look at the plate and estimate that I had at least 100g of carbs there.

I went on to say that I would enter 100g into my insulin pump, and that the pump would deliver an insulin dose for me.

I went on to explain that I can technically eat anything, so long as I cover it with insulin.

I went on to explain that I should still be mindful of how many carbs I eat, but that it was Easter and I didn’t care so much today.

I went on to explain that if it wasn’t Easter and I did care a bit more, a back up bolus of at least 15 minutes would also be helpful.

I didn’t explain the months of hard work that went into perfecting my basal rate, so that my mealtime insulin does its job and doesn’t get stuck in quicksand.

I didn’t explain how I weigh all of the food I prepare at home, multiply that weight by carb factors, and then divide it by my own unique insulin to carb ratio.

I didn’t explain how some foods are digested very slowly, while others are digested very rapidly, and insulin needs to be backed up or delayed accordingly.

I didn’t explain that a larger, higher fat or restaurant meal, requires a temporary basal rate for several hours to combat the insulin resistance.

I didn’t explain the importance of checking my blood sugar levels post meal, to ensure that my insulin is doing its job.

I didn’t explain that sometimes I get it wrong, and I end up eating my way out of lows.

I didn’t explain that sometimes I also get it wrong, and I end up shovelling down insulin and bucket loads of water at 3am to bring down the highs.

I didn’t explain the huge investment I’ve had to put into learning, observing and applying, so that I don’t make these errors so often and see more numbers in range.

I know that my uncle wasn’t trying to be rude or judgemental. And it was nice of him to ask. I liked that it opened up the dialogue, and that I could deflate the stigma around sweets and diabetes.

It’s just a shame that despite how simply I’d put it, nobody in that room will remember a word of what I said.

It’s a shame that despite how many times I check my blood sugar or pull out my pump during the day, nobody seems to notice the diabetes.

It’s a shame that I’m only ever asked these questions when I’m seen with a plate piled high with desert.

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Throughout my childhood, my parents constantly told me that I shouldn’t compare myself to others. Unless I had done poorly on my Year 12 English exam, in which case it was perfectly okay for them to ask me what scores the other guys in my class had obtained…

It’s easier said than done, right?

When it comes to diabetes, I am my own worst critic.

It’s so easy to feel guilty when I wake up to a number that’s out of range.

It’s so easy to place blame for a hypo that was caused by a lapse of better judgement.

It’s so easy to feel anxious about my future during times when my diabetes management might not be so smooth sailing.

Connecting with, and meeting other people with diabetes has been nothing short of amazing. Everyone has their own, unique story to tell. Everyone is passionate about their story, and the way that they manage their diabetes. I drank in the knowledge. I felt inspired, motivated, and dare I even say passionate about diabetes. I no longer felt so isolated, or so alone when it came to living with diabetes.

However after immersing myself in this world for a while, there also comes a point where I might begin comparing myself to other people.

Why aren’t I going for a run every morning?

Why am I not able to wear a CGM without letting it overwhelm me?

Why aren’t I eating clean?

Why don’t I have that hba1c?

Why isn’t my graph as flat as that one?

Why don’t I practice mindfulness?

Why am I not bursting with energy when I woke up this morning?

As amazing as this world is, there also comes a point where I have to put all of these perspectives into a box and focus solely on my own.

I am not that person who goes running every morning. I am not that person who is reading my latest blood sugar levels from an array of devices. I am not that person who is eating clean, super mindful and bursting with energy either.

We made it to the finish line of 2016, with a New Year and the promise of a fresh start ahead of us.

I hope you had a wonderful festive season, and hopefully some time out to recharge the batteries. With the reality of heading back to work tomorrow starting to sink in, the festive season is well and truly over for another year.

This little corner of the internet also happened to mark its second birthday last week. It’s been two years since I began blogging here at Type 1 Writes, and since I first entered into the fray that is the Diabetes Online Community.

As often as I am thanked for my blog and it’s helpfulness, I’ve needed this space just as much as you. This space started out as the pet project of a university graduate, and I never really knew what would become of it.

I struggled with managing a very demanding and isolating condition that is type 1 diabetes. I wasn’t satisfied with the state of my management, but I lacked the knowledge and motivation to do all of the things that added up half decent blood sugar levels.

The past two years have brought a wave of peer support, knowledge, learning, inspiration, empowerment and “me toos.” Although diabetes is an impossible condition to manage at the best of times, I feel I have a far better idea of how to tame it than I once did.

I really owe it to all of you.

The supportive comments that have come from my blog posts. The conversations that happen on Twitter. The support from people on my own Facebook page who I didn’t think would care less about diabetes. The e-mails that arrive from the contact page on my blog. Your articles and blog posts that provide me with insights and inspiration to apply to my own diabetes management. To those of you who are kind enough to check in when my blog is quiet. To my family at home who I couldn’t have done this, and diabetes, without.

2 years, 313 posts, 1,110 comments, 5,000 odd tweets, 100 or so OzDOC chats, and thousands of coffees later, I can’t thank you enough for the past two years.

Having diabetes absolutely sucks, but you guys make it suck just a little bit less.

Scruffy and I wish you nothing but the best for 2017. Make it a good one, friends.

(P.S. Scruffy, I’m still waiting for that guest post you were going to write for me months ago…)